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nationalMSsociety.org/momentum SUMMER 2019
Acing
temperature
control
How to cope
with heat
sensitivity
22
FUNCTION AND STATE OF FINDING
FASHION page 11 LIMBO page 30 NEURO page 63
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Laura S., living with relapsing MS
Say yes to TECFIDERA—a pill that can cut MS relapses in half.
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Tecfidera® (dimethyl fumarate) is a prescription TECFIDERA may cause serious side effects including:
medicine used to treat people with relapsing forms of • Allergic reactions
multiple sclerosis. • PML, which is a rare brain infection that usually
Important Safety Information leads to death or severe disability.
Do not use TECFIDERA if you have had an allergic • Decreases in your white blood cell count. Your
reaction (such as welts, hives, swelling of the face, lips, doctor should check your white blood cell count
mouth or tongue, or difficulty breathing) to TECFIDERA before you take TECFIDERA and from time to time
or any of its ingredients. during treatment
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infections or any other medical conditions. TECFIDERA and during treatment if needed.
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° dark or brown (tea color) urine counter medicines, vitamins, or herbal supplements.
° yellowing of your skin or the white part of your eyes If you take too much TECFIDERA, call your doctor or
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over time. Taking TECFIDERA with food may help This is not intended to replace discussions with your doctor.
reduce flushing. Call your doctor if these symptoms
bother you or do not go away. Ask your doctor if taking
yes to finding support
aspirin before taking TECFIDERA may reduce flushing.
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These are not all the possible side effects of
TECFIDERA. Call your doctor for medical advice about *Based on number of prescriptions from IMS NPA™ Weekly Data
side effects. You may report side effects to FDA at (September 27, 2013 – February 23, 2018).
1-800-FDA-1088. For more information go to
dailymed.nlm.nih.gov.
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Patient Information
TECFIDERA® (tek” fi de’ rah)
(dimethyl fumarate) delayed-release capsules
What is TECFIDERA?
• TECFIDERA is a prescription medicine used to treat people with relapsing forms of multiple sclerosis (MS)
• It is not known if TECFIDERA is safe and effective in children under 18 years of age
Who should not take TECFIDERA?
• Do not use TECFIDERA if you have had an allergic reaction (such as welts, hives, swelling of the face, lips, mouth or tongue,
or difficulty breathing) to TECFIDERA or any of its ingredients. See below for a complete list of ingredients.
Before taking and while you take TECFIDERA, tell your doctor if you have or have had:
• low white blood cell counts or an infection
• any other medical conditions
Tell your doctor if you are:
• pregnant or plan to become pregnant. It is not known if TECFIDERA will harm your unborn baby.
• If you become pregnant while taking TECFIDERA, talk to your doctor about enrolling in the TECFIDERA Pregnancy Registry.
You can enroll in this registry by calling 1-866-810-1462 or visiting www.tecfiderapregnancyregistry.com. The purpose of this
registry is to monitor the health of you and your baby.
• breastfeeding or plan to breastfeed. It is not known if TECFIDERA passes into your breast milk. You and your
doctor should decide if you will take TECFIDERA or breastfeed.
• taking prescription or over-the-counter medicines, vitamins, or herbal supplements
How should I take TECFIDERA?
• Take TECFIDERA exactly as your doctor tells you to take it
• The recommended starting dose is one 120 mg capsule taken by mouth 2 times a day for 7 days
• The recommended dose after 7 days is one 240 mg capsule taken by mouth 2 times a day
• TECFIDERA can be taken with or without food
• Swallow TECFIDERA whole. Do not crush, chew, or sprinkle capsule contents on food.
• Protect TECFIDERA from light. You can do this by storing the capsules in their original container.
• If you take too much TECFIDERA, call your doctor or go to the nearest hospital emergency room right away.
What are the possible side effects of TECFIDERA?
TECFIDERA may cause serious side effects including:
• allergic reaction (such as welts, hives, swelling of the face, lips, mouth or tongue, or difficulty breathing)
• PML a rare brain infection that usually leads to death or severe disability
• decreases in your white blood cell count Your doctor should do a blood test before you start treatment with TECFIDERA
and while on therapy.
• liver problems. Your doctor should do blood tests to check your liver function before you start taking TECFIDERA and
during treatment if needed. Tell your doctor right away if you get any of these symptoms of a liver problem during treatment.
severe tiredness
loss of appetite
pain on the right side of your stomach
have dark or brown (tea color) urine
yellowing of your skin or the white part of your eyes
The most common side effects of TECFIDERA include:
• flushing, redness, itching, or rash
• nausea, vomiting, diarrhea, stomach pain, or indigestion
• Flushing and stomach problems are the most common reactions, especially at the start of therapy, and may decrease
over time. Taking TECFIDERA with food may help reduce flushing. Call your doctor if you have any of these symptoms
and they bother you or do not go away. Ask your doctor if taking aspirin before taking TECFIDERA may reduce flushing.
These are not all the possible side effects of TECFIDERA. Call your doctor for medical advice about side effects.
You may report side effects to FDA at 1-800-FDA-1088. For more information go to dailymed.nlm.nih.gov.
General Information about the safe and effective use of TECFIDERA
• Medicines are sometimes prescribed for purposes other than those listed in this Patient Information. Do not use TECFIDERA
for a condition for which it was not prescribed. Do not give TECFIDERA to other people, even if they have the same symptoms
that you have. It may harm them.
• If you would like more information, talk to your doctor or pharmacist. You can ask your doctor or pharmacist for information
about TECFIDERA that is written for healthcare professionals.
What are the ingredients in TECFIDERA?
Active ingredient: dimethyl fumarate
Inactive ingredients: microcrystalline cellulose, silicified microcrystalline cellulose, croscarmellose sodium, talc,
silica colloidal silicon dioxide, magnesium stearate, triethyl citrate, methacrylic acid copolymer - Type A, methacrylic
acid copolymer dispersion, simethicone (30% emulsion), sodium lauryl sulphate, and polysorbate 80.
Capsule Shell: gelatin, titanium dioxide, FD&C blue 1; brilliant blue FCF, yellow iron oxide and black iron oxide.
Manufactured by: Biogen Inc., Cambridge, MA 02142, www.TECFIDERA.com or call 1-800-456-2255
This Patient Information has been approved by the U.S. Food and Drug Administration. Revised: 1/2017
Momentum is published quarterly by Vol. 12, No. 3
the National Multiple Sclerosis Society
Chair of the The National MS
Board of Directors Society is proud to be
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about MS. Our
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nationalMSsociety.org/momentum 3
SUMMER 2019
22
on the cover
departments
forward 6
What a cure for MS means
@momentum 7
Samir Chandiwala Readers sound off
can play tennis again
in the summer after pulse on MS 9
moving to a cooler Nearly 1 million people live
climate to relieve with MS in the U.S.
his heat sensitivity.
move 56
Bike MS: Miles to go
connect 63
Finding a neurologist
impact 68
PHOTO BY MATTHEW ALLEN
Sailors with MS
fired up 72
Tell me something interesting
this is me 76
features
Understanding through
images
“I got 99 problems, and
87 of them are side effects.”
thrive
ILLUSTRATION COURTESY OF JESSIE ACE
Acing temperature control
How to cope with heat sensitivity 22
State of limbo
A definitive MS diagnosis can take time—
and patience. 30
Look for these
icons throughout
Momentum.
@
CALL BROWSE CLICK EMAIL DOWNLOAD WATCH
4 momentum ■ Summer 2019
10
more stories
in the know
Function and fashion 11
Testing ground 15
solve
A big part of the MS puzzle 44
Pregnancy and MS 49
IN Teens with MS face the challenges
of growing up with their disease.
THE PLUS: Caring for carepartners and
NEXT reactions to data showing 1 million
ISSUE people in the U.S. live with MS.
43 Contact Momentum
nationalMSsociety.org/momentum
Address drop, add or change
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Momentum Editor
National MS Society
900 S. Broadway, Suite 200
Denver, CO 80209
@ editor@nmss.org
Letters to the editor must include your
name, your home state, and a way for our
staff to contact you. Letters should be no
more than 100 words and may be edited.
nationalMSsociety.org/momentum 5
forward
A note from the President & CEO
W hen I wrote about finding a cure for
multiple sclerosis in this column
last year (Forward, Summer 2018), I asked,
At the National MS Society, we are
relentlessly pursuing the fastest path to
a cure for MS (see our FY2019 to 2021
“What does a cure mean to you?” I received Strategic Plan at nationalMSsociety.org/
many replies that were powerful and About-the-Society/Vision/Strategic-Plan).
moving. A cure can be described in several Our approach is to seek input from
ways that can be categorized as follows: experts—scientists and clinicians with
Stop MS in its tracks: No additional various expertise—as well as people
damage, no progression of the disease. affected by MS because no one knows
Restore what has been lost: Get their MS better than a person living with
back the abilities I had before I had MS, the disease. We invest more than $40
a reversal of symptoms. million a year in innovative research and
End MS: No one else gets diagnosed
with MS. @ expanding the MS research workforce
while we promote collaboration and shared
For some, a cure means one of these learning to speed discoveries. We launched
definitions specifically. For others, it means Let me know your a global conversation: “What are the
thoughts. Email me at
all of them. A sampling of what I heard: specific pathways to the cures that people
cyndi@nmss.org.
with MS want and need?” We strive to gain
“My idea of a cure is first things, first— 733 Third Ave., international consensus to focus worldwide
whether it is relapsing, progressive Third Floor, investments in MS research to get us down
New York, NY 10017
or whatever—just stop it from getting those pathways quickly, investing in the
worse.” —Rand Garrett research that has the most promise.
To achieve a Stop Cure, we need to
“To me, a cure means I can walk, run, understand what causes MS disease
skip, jump again. I can think of what activity to flare up. A Restore Cure requires
to say. I will feel alive, play with my therapies that will promote repair, getting
granddaughter. It means to live a the central nervous system to heal and get
normal life, to be able to walk next to back to a pre-MS state. The End MS Cure
my husband, have friends and go out pathway starts with knowing the cause of
for lunch and shopping again, just like MS and who is at risk for the disease.
I used to.” —Jayne Almonrode We have brilliant, passionate, committed
people working on these pathways. I hope
“A cure means complete eradication of you have the opportunity to meet some
this terrible disease, not just slowing of them, and when you do, to share your
its progress or relieving symptoms. perspective and your encouragement.
Eradication means no one will ever get I love hearing what’s on your mind. What
it again. A cure also means people like are you thinking about these days? What
myself who already have MS will be do we, at your MS Society, need to know
able to have the damaged myelin and about you?
nerves repaired and restored to normal
function. Yes, I want it all before I will
call it a cure.” —Marge Carter
6 momentum ■ Summer 2019
@ momentum
Letters, thoughts and responses
Getting help for depression The ability to create
I just read and appreciated the article about the hidden Thank you so much for your article by Brooke
symptom of depression (“The hidden symptom,” Spring Pelczynski, “New ways of creating” (Spring 2019).
2019). I’ve dealt with MS symptoms for 37 years. I was diagnosed with MS in 1997. At the time it
Hearing that depression is an MS symptom freed me never occurred to me that I would leave a job I loved
to get help for depression as [when I was] 23 with no and start disability benefits, that I’d end up needing
visible MS symptoms. In the past 27 years, I have been a walker or that my physical activities would become
slowly disabling. I am now in a wheelchair and totally so limited it changed the way we lived. What saved
dependent on a caregiver (my husband) for meeting me was my ability to create. My love of making jewelry
my daily needs. I am now dealing with depression brought me joy while keeping me sane when other
specifically connected with grieving, for almost three parts of my body refused to respond. As the progression
decades, the continual loss of functioning. I am seeking and loss from MS has continued over the last 21 years,
specialized counseling to deal with the disabling grief so have I. I’ve adjusted my creativity to my abilities.
I feel for now and for the past. Fortunately, I live two Working with leather took the place of beads. Working
miles from the Mayo Clinic and this help is available. with paper in all forms lets me create cards and gifts.
Thank you for addressing this issue. My newest passion is felting. I start small. I try to set
myself up for success. Being able to still create in any
Therese Anderson, Minnesota form somehow makes me feel like I’m winning the battle.
Debbie Salazar, Washington
A powerful diagnostic tool
While perusing my Winter 2018–19 issue of
Momentum, I happened upon the article, “A better
look,” about Dr. Frederik Barkhof regarding MRIs.
I was 24 in 1980 when the neurologist I initially met
with did a “spinal tap” and CT scan and gave me a
cursory diagnosis of MS, saying I could look forward
PHOTO BY RIKU FOTO
to being in a wheelchair and living a handicapped life
in two to three years! I was beginning a new career as
an accountant, newly wed, with a 6-year-old daughter.
That evening, my new husband consoled me and said
we would fight through this together. At the time I was
The feeling is familiar living in Northern Colorado, 50 miles from Denver and
Thank you and Brooke Pelczynski for her article, “New the University of Colorado Medical Center. There were
ways of creating” and her cover illustration (Spring no support groups or websites or any new research
2019). I really connected with her illustration of known by “lay” people. I located a neurologist at the
depression: having one’s head in the sand, preventing medical center who was working in immunology and
you from seeing the beauty all around you. I know that the new diagnosis of MS. At the time, MRI was a new
feeling. Acceptance of my situation while finding a way entity. This physician believed in the MRI and had me
to appreciate the good is a daily challenge. My first take one. He said it would be a much better test for the
grandchild is a major motivator for me. diagnosis and so it was. It showed obvious scarring in
the right brain. He also said to keep working and living
Sid Burwell, California my normal life. Don’t change anything! In 1996, things
nationalMSsociety.org/momentum 7
@momentum
in my life changed, with great periods of stress. My MS
reared its ugly head and showed its true colors. I walk
now with a walker and travel with a wheelchair. MRI is
definitely a great diagnostic tool.
Colleen Richardson
Doing the right thing
The article on cognitive function in the Spring 2019 not allow him to transfer, and when we travel I have
Momentum magazine (“A closer look at cognition”) a portable Hoyer lift. The problem is many hotel chains
reassured me that I am doing the right thing. I was do not accommodate for under the bed clearance. The
diagnosed with relapsing-remitting MS in 2003. I beds are usually on a platform base. It is frustrating
recently took an MS cognitive evaluation at Lehigh because I call the individual hotel and ask to speak to
Valley Hospital in Allentown, Pennsylvania. The test a manager who is usually unavailable and the front desk
was administered by a neuropsychiatrist and was does not know. On occasion you check in and the bed
covered by Medicare. I am waiting for the results. is on a platform and he ends up sleeping on a pull-out
One thing notable about this test was that it only took sofa bed, which is uncomfortable and not acceptable.
two and a half hours. Before the test, I was concerned Once we encountered that our reservation was booked
about fatigue. I know if I am fatigued, my cognitive over and our room was given to someone that did not
function goes down. It is one of my biggest sources of even need an accessible room. It is a simple task and
disability and can be very scary. This shortened version I don’t understand why all the major chains cannot
of testing took that into consideration. On a side note, accommodate with at least a couple of rooms.
I had to chuckle about the line in the article about
rewashing clothes. I compensate for that problem by Colleen and John Petersen, Michigan
using liquid detergent and throwing the measuring
cup in the washer with the laundry. Recently, I did
laundry before bed and went to bed wondering if I had My personal marathon
remembered the detergent. In the morning, I saw the I want to thank Dorothy R. Dickhaus for her comments
cup in the washer and knew I had remembered. I felt about all the “success stories” written by this magazine
good that I came up with this solution myself. (@Momentum, “No more pie-in-the-sky-stories,”
Spring 2019). Stories should be told about people like
Nancy Wilson, New Jersey myself who are in a wheelchair and battle every day
just to be able to get out of bed. That’s my personal
“marathon” that more people, both with or without MS,
Rooms not always accessible should be made aware of.
Thank you for publishing the article, “It’s your
community, too” (Spring 2019). My husband’s MS does Ronald Baznik, Pennsylvania
Let’s hear it! Share your
thoughts and comments about
@
Email us at
editor@nmss.org.
Like and comment
on our page at
Tag your
thoughts
Join
discussions
this issue’s stories. facebook.com/
nationalMSsociety.
@mssociety
using
at
MSconnection.
#Momentum. org.
8 momentum ■ Summer 2019pulse MS
News and insights
ON
Study: Nearly 1 million people live with
MS in U.S.
More than twice
the previous
estimate.
by Marcella Durand
Learn more about
the prevalence
study at ntlms.org/
prevalence.
I n the first national study of the prevalence of multiple
sclerosis in the U.S. since 1975, researchers have
determined that nearly 1 million people currently live
“The study demonstrated that there has been a
steady rise in the prevalence of MS over the past
five decades in the U.S., that the prevalence of MS
with MS, more than twice the original estimate. remains higher for women than for men, and that a
“For the first time in 40 years, [the study] provides an north-south geographic gradient still persists,” says Dr.
accurate estimate of the number of people living with Wallin. “Future research will be needed to assess how
MS in the United States,” says Nicholas G. LaRocca, prevalence is different within racial groups, how aging
PhD, former vice president of healthcare delivery and impacts the course of MS, and how MS incidence and
policy research for the National Multiple Sclerosis mortality are changing in the U.S.”
Society and now an independent contractor. The study Dr. Wallin and LaRocca worked together with a team
was published February 2019 in the journal Neurology. of epidemiologists, neurologists and statisticians to
“Having an accurate MS prevalence estimate along develop the algorithm that allowed them to accurately
with incidence on a recurring basis helps to more identify people with MS based on health claims
optimally plan for clinical care needs and can provide data. The team has noted that this algorithm has the
helpful clues for researchers to better understand risk potential to be used for other chronic neurological
factors for onset and progression,” says Mitchell T. conditions, as well.
Wallin, MD, associate professor of neurology at George “This study tells us many things, but one thing in
Washington University and University of Maryland particular: Twice as many people need a cure,” says
School of Medicine, and the director of the VA MS Cyndi Zagieboylo, president and CEO of the Society,
Center of Excellence-East. which launched and supported the study.
The updated estimate has already yielded fresh
insights and understanding into the disease. Care to comment? Email us at editor@nmss.org.
nationalMSsociety.org/momentum 910 Function and
fashion 11
Testing
ground 15
“Enclothed cognition”
What clothes we wear certainly make an impression on
those around us. Now, studies show that the clothing we
wear can affect our own personal physical and mental
states, including how we feel about ourselves. Scientists
have coined this phenomenon “enclothed cognition.”
In one study, participants wearing a coat associated
with a doctor showed heightened and sustained
attention compared to participants who wore
a coat associated with a painter or who only
looked at a doctor’s coat.
Wearing clothes you like can also give
you confidence or make you feel more
comfortable. Adaptive clothing—apparel
designed to help solve challenges and
improve the quality of life for people
facing mobility, sensory or cognitive
challenges—is gaining popularity, and
with more attention comes more
fashionable choices. Read more
about adaptive clothing in “Function
and fashion” on the next page.
Source: Journal of Experimental
Social Psychology
Practical ideas
for living well
with MS
in the knowin the know
Function
and fashion
Adaptive clothing can look good, too. Above: Rally UHC PHOTO COURTESY OF VAN AND LUANNE VAN DIBERNARDO
Cycling team
by Shara Rutberg members wear
cooling vests to
“IThat’s
regulate body
looked like a fisherman. An industrial fisherman.” temperature.
how Van DiBernardo described a cooling vest
he wore years ago to help regulate his body temperature. Left: Coolture’s
simple design
“It was not a good look for me,” he says, laughing. makes cooling
And the 54-year-old knows a good look when he sees vests easy to use.
it. He spent years as a globetrotting shoe designer
for DKNY. After he was diagnosed with MS at 26,
he tried different cooling vests designed for industrial
nationalMSsociety.org/momentum 11in the know
settings to help reduce symptoms. He appreciated the mother of a child with muscular dystrophy, to create
cooling, but hated how they felt and looked. When he Tommy Adaptive, a clothing line more inclusive to
complained to his sister Luanne DiBernardo that he children with disabilities. The next year, Tommy
looked way too Field and Stream, she told him, “You’re Adaptive expanded to include “modified mainstream”
a designer. Why don’t you design a better one?” After clothing for adults, too. “Inclusivity and the
much research and innovation, they created Coolture democratization of fashion have always been at the
and its Signature Cooling Vest. With a contoured cut, core of my brand’s DNA,” Hilfiger said in a statement.
clean lines and high-tech fabrics, it proved way more “These collections continue to build on that vision,
GQ than Deadliest Catch. empowering differently abled adults to express
Historically, adaptive clothing—apparel designed themselves through fashion.”
to help solve challenges and improve the quality of Target launched Cat & Jack in 2016 and expanded
life for people facing mobility, sensory or cognitive the line to include sensory friendly and adaptive
challenges—has been “quite horrific,” said Deborah apparel in 2017. In 2018, Target added Universal
Weinswig, founder and CEO of retail research firm Thread, a women’s lifestyle line that includes select
Coresight Research, during a presentation at the sensory friendly and adaptive apparel items, to its
2018 “One Size Does Not Fit All: own brand portfolio. The same year,
Inclusive Design & the Modern Zappos debuted its adaptive clothing
Consumer” conference. When you wear clothing line, Independence Day. The retailer
The focus has been on functional, that makes you feel now has a department called Zappos
not fashionable, she said. Adaptive featuring its own brands
That’s changing. good, you have more
and others that are designed to make
confidence.” life easier—and more fashionable—
Big brands join in — KATHLEEN ZACKOWSKI, PhD for people with disabilities.
In recent years, not only have small, These new lines include features
innovative companies like Coolture like ultra-soft materials and heat
launched stylish adaptive clothing, big brands and transfer labels (instead of hanging tags) to avoid
retailers have stepped up, too, which is bringing down irritating skin, necklines with wider openings and
prices and increasing the availability of the clothing. more forgiving waistbands and wider legs for easier
The category is big business. The U.S. adaptive on-off, magnetic closures, denim with flattened seams
fashion market will reach $44.5 million in 2019 and to reduce pressure points, zip closures, and hidden
$51.1 million by 2022, according to Coresight, which openings for abdominal access and outerwear with
forecasts the global adaptive fashion market to hit zip-off sleeves.
$278.2 billion this year and $325.8 billion by 2022.
One in five Americans lives with a disability, according Features that make things easier
to the U.S. Census Bureau, providing a huge Features that make clothes easier to put on and take off
opportunity in the market. And as more manufacturers are particularly helpful to people living with MS, says
work to fill the void, people living with disabilities, like Kathleen Zackowski, PhD, senior director of patient
those caused by MS, will have more options for clothes management, care and rehabilitation research for the
that are easy to wear and that they feel good about wearing. National Multiple Sclerosis Society. “It may sound like
In 2015, Nike introduced FlyEase technology, a small thing, but for some people with MS, getting
engineering sneakers with zips in the back for easy dressed can use all of the energy someone has for the
entry and wider widths to accommodate orthotics. rest of the day,” she says. “More sophisticated [with
In 2016, Tommy Hilfiger partnered with Runway of external zipper but elastic waistband] easy on-off pants
Dreams, a nonprofit founded by Mindy Scheier, a are ideal for people with MS who have issues with
12 momentum ■ Summer 2019incontinence, who have a hard time getting to Van and Luanne
DiBernardo created
the bathroom on time.” a cooling vest
Adaptive clothes with features like magnetic closures that is stylish and
have been “liberating,” says Tim Hilton, 51, whose functional. Van,
MS makes it difficult to manipulate buttons and diagnosed with
MS at 26, tapped
zippers. “It’s like when a person with MS gets into his design and
a scooter or a car they can drive with their hands. fashion background
PHOTOS COURTESY OF VAN DIBERNARDO
With these clothes, you can get dressed by yourself and to create adaptive
clothing.
be independent again.”
Pants with wider legs or zippers up the ankles that
allow them to be worn over leg braces can also be key
items for people with MS. That way, the pants don’t
draw attention to the equipment, Zackowski says.
“Unfortunately, there’s a big problem in our society
with assumptions made about the cognitive abilities
nationalMSsociety.org/momentum 13in the know
PHOTO COURTESY OF TARGET
of anyone who needs any kind of extra equipment to
walk. These assumptions lead to misunderstandings,
especially for people with MS who are not impacted
cognitively,” she says.
One category designers need to address is bras, Target‘s Cat & Jack clothing line was expanded to
Zackowski says. “It’s a big issue for women. It’s really a include sensory friendly and adaptive apparel in 2017.
personal necessity, with few adaptive options. Putting
on a bra requires some strength and fine motor be able to step up and present yourself like you used
coordination. And adaptive bras are often expensive.” to,” says Hilton, who notes what a relief it is to no
Innovative technology, like the materials in the longer worry about having to open and close pants or
Coolture cooling vests and headbands, can help ask for help if he has to use the restroom during an
people with MS regulate body temperatures. “It’s an event. Being able to wear stylish clothes again is also
absolute lifesaver,” says Kristine Moor, 30, who has empowering, he says. “With MS, life becomes very
relapsing-remitting MS, of the cooling vest she wears functional, as opposed to fashionable,” he says. “It’s
over her clothes nearly every day in the summer to great to be able to add a touch of flair. It helps you feel
prevent overheating. ‘normal’ again.”
Designers are using other technology to create Not having the proper work clothes poses a real
clothing directed at symptoms of other conditions, barrier for people with disabilities in the workforce,
too, like pneumatic “hugging” compression vests for according to a recent University of Missouri study
people with autism and clothing with QR codes that published in the journal Society. The study found that
“speak” a description of each item for blind people. workplace participation can be hindered by lack of
For nearly four years, designers, engineers, occupational appropriate clothing, which can increase the stigma
therapists and people with various disabilities have of people living with a disability. When people wear
gathered at Open Style Lab, a nonprofit sponsored appropriate clothing, their effectiveness is enhanced
by Parsons School of Design, to create technology- tremendously, according to the study. Researchers have
based wearable solutions for people of all abilities recently coined the term “enclothed cognition”
without compromising on style. Each summer the to describe the impact that clothes have on mood
team produces bespoke outfits for four or five people and health.
who have disabilities ranging from nerve sensitivity “The clothes you wear describe you,” Van DiBernardo
to paralysis. says. “And it’s great to feel like you’re describing
yourself, not a disease.”
The self-confidence factor
The power of stylish adaptive clothing goes beyond Shara Rutberg is a writer in Evergreen, Colorado.
making clothes more comfortable and easier to take
on and off. Wearing clothes you love that don’t look
“disabled” can make a big impact psychologically.
“Clothing may sound trivial, but I really don’t think it
is,” Zackowski says. “Clothes can represent the person
you’re seen as in public. When you wear clothing
that makes you feel good, you have more confidence. Find more resources and support at
There’s a different mental outlook that you get from nationalmssociety.org/
wearing clothes you like.” Resources-Support.
“It’s a total confidence builder to be able to go to
a function where people are going to be dressier, and Care to comment? Email us at editor@nmss.org.
14 momentum ■ Summer 2019in the know
Testing
ground
Pros and cons of
participating in
clinical trials for
K aren Jackson has been happily filling
out surveys, giving extra vials of
blood and undergoing MRIs and lumbar
MS research. punctures for clinical trials since 2006. The
58-year-old from Alexandria, Virginia, was
by Aviva Patz diagnosed with relapsing-remitting multiple
sclerosis in 1996, then with primary
progressive MS in 2003. “For me, it’s a
no-brainer,” she says. “There aren’t a lot of
treatment options for primary progressive
MS. This is a way for me to continue to be
PHOTO COURTESY OF KAREN JACKSON
part of the solution, part of the answer.”
Clinical trials are at the heart of finding
Karen Jackson, new and better treatments for MS. They
diagnosed with help scientists understand how MS
MS in 1996, has
benefited from develops and whether treatments—from
medications from disease-modifying therapies (DMTs) to
clinical trials. rehabilitation strategies—are safe and
nationalMSsociety.org/momentum 15in the know
effective. Participating has pros and cons, Details of trials An interventional
but one thing is certain: There can be no clinical trial is one
Studies can last from weeks to months that tests new
progress without it. “Everyone owes a debt to years or even the rest of your life, in therapies as well
of thanks to people who have participated the case of long-term research. Timing as complementary
in clinical trials, who have helped pushed depends on the phase of the research, therapies, such as
a special diet.
the field forward, because all trials, even what it’s testing and other variables. How
unsuccessful ones, teach us valuable you participate will also vary widely—you
lessons,” says Ari Green, MD, director might be trying an app, modifying your
of the MS Center at the University of diet, taking vitamins or pills (including
California at San Francisco. “Everyone with disease-modifying therapies), giving
MS has benefited because of the risk or extra vials of blood or having extra
the inconvenience of the people who came MRIs, getting your skin biopsied, getting
before them.” Read on to learn more about injections or infusions, or testing out
participating in clinical trials for MS and different ways of walking, exercising or
whether they’re right for you. doing physical therapy.
How to find clinical trials How to enroll
There are two main sources of MS clinical You can ask your physician to refer you, or
trial listings: One is the National Multiple you can apply directly by emailing or calling
Sclerosis Society website (ntlms.org/ the contact listed in the trial description.
Trials), which allows you to search for The researchers will then determine if
trials by state, type of MS or keyword. You you meet the eligibility requirements—for
can also check the website of the National example, you may need to be over 18, live
Institutes of Health (clinicaltrials.gov), within 150 miles of the research facility
where you can search more than 290,000 and fall within certain levels of disability
research studies in all 50 states and in 207 and duration of disease. Check with your
countries. Search by condition to find MS- neurologist to ensure it makes sense for
related trials. you, and put your doctor in touch with the
16 momentum ■ Summer 2019researchers running the study to ensure Dr. Green is studying ways to take
that it’s a fit. It isn’t always. For example, advantage of the body’s existing capacity
you might like the idea of testing a DMT, for repair. “In MS, primary early damage
but therapies are sometimes compared to occurs to the myelinating cells of the
inactive placebos. If you end up getting a central nervous system,” he explains.
placebo instead of the medication and that “There are cells that are meant to repair
could put you at risk, it’s not safe for you that damage, but for some reason in MS
to participate. they don’t do what they’re supposed to do—
we’re looking to help those cells overcome
Types of studies the barriers keeping them from doing
There are two basic types of studies in their job.” Results of his first trial with a
which people with MS might participate, medication, which were promising, were
according to Joan Ohayon, senior nurse published in The Lancet in 2017, and he’s
consultant with the Neuroimmunology now doing a second trial to evaluate the
Clinic at the National Institutes of Health. best timing for that medication.
The first type simply gathers information
to understand more about the disease Key factors to consider
and doesn’t involve interventions. For Obviously, you want to consider logistics
example, the School of Communication like the time commitment, scheduling, and
Sciences and Disorders at the University whether you can handle what’s involved
of Memphis is studying how different (like hour-long MRIs every six months)
neurological conditions impact speech. and any risks the study might pose. “It may
Researchers at the University of Illinois in depend how risk-averse you are,” Ohayon
Urbana-Champaign and Carle Hospital says. Then you’re going to want to start
are exploring the relationship between asking questions. You can find a complete
nutrition and eye health among people list of questions on the website of the
with MS. Then there’s a USC Multiple Center for Information and Study
Sclerosis Center study looking to validate on Clinical Research Participation,
a smartphone app called “myMS,” which (ciscrp.org/education-center/
helps track MS at home. questions-to-ask), but these are among Participating in
For longer-term information gathering, the most important: a clinical trial
you can get involved in a registry designed What are we trying to learn? could include
commitments
to capture the real-life experience of You might think the answers are in and tests, such
people living with MS. One example is the trial description, but it can be as getting MRIs.
iConquerMS, which involves completing complicated, according to Dr. Green, so
surveys about daily experiences and ask for a breakdown in simple language.
symptoms, sharing medical records, and What is the background data
suggesting research topics and questions to support this approach?
(iconquerms.org). Ask the investigators to provide evidence
The second type of study is an of why they believe this therapy will
interventional clinical trial that tests new work. Beware of a hard sell, warns Dr.
therapies and rehab strategies, whether it’s Green. “If you feel like the researchers
a new treatment or an add-on treatment, or are making false promises or painting an
a complementary therapy such as a special overly rosy picture of the possible results,
diet, yoga or meditation. For example, that’s a reason to be skeptical,” he says.
nationalMSsociety.org/momentum 17in the know
Has the treatment been
tested before?
If so, on how many people? What
are the possible side effects?
What kinds of tests and
treatments are involved?
If you’re not comfortable with any of
the elements, that’s a deal-breaker.
“There’s no reason to feel coerced to
participate—it’s your body, it’s your
condition,” Dr. Green says.
What are the possible risks and
benefits in the study compared with
my current treatment?
Who will pay for the
PHOTO COURTESY OF ANITA WILLIAMS
experimental treatment,
or any of the tests, and will I be
reimbursed for other expenses such
as mileage, parking or meals?
If the treatment works, can
I continue receiving it?
Benefits of enrolling
What’s in it for you? The short answer: participated in clinical trials that gave us Anita Williams
You’ll receive regular and careful medical the information we have today. The DMTs volunteers for
clinical trials as a
attention from a team of doctors and other are all possible because of them, and I way to contribute
health professionals; you’ll possibly have want to do the same for others.” to MS research.
access to new treatments before they’re Jackson did benefit from one
widely available; and you’ll help others experimental medication. But more
by contributing to understanding of new gratifying for Jackson has been having
treatments or procedures. “Sometimes access to top-notch teams of dedicated and
negative studies are just as informative or passionate clinicians. When she developed
more informative than positive ones, so it’s a pressure sore on her right hip, it was
good to go into the study thinking, yes, this successfully treated the same day by the
may benefit me, but more important, I’m study team’s wound department. “Had it
benefiting the greater good,” Ohayon says. not been for my connection to the National
Anita Williams, 49, of Aurora, Colorado, Institutes of Health, I wouldn’t have gotten
has volunteered in clinical trials since that early intervention and would have
2015 for that very reason. “I said ‘yes’ suffered so much longer,” she says.
because I wanted to contribute to MS
research, especially as a black woman Potential downsides of enrolling
who would like to see more African What are the risks? Besides logistical
Americans represented,” she says. “It’s inconveniences—the time, interventions
the MS patients who came before me and and even costs involved—the experimental
18 momentum ■ Summer 2019treatment you’re getting may not be
effective. Or you could be in the control
group and not get active medicine. Worse,
you could take the active medicine and
have unpleasant and even serious side
effects. “It could be that you take a
medication and suddenly your disease gets
worse—it’s definitely a risk,” Ohayon says.
“But there are many steps along the way to
minimize the risk category.” It’s important
to note that participants are monitored
closely for side effects and other issues.
Phases of clinical trials
Every therapy undergoes several phases
of testing:
Phase I is a small study that determines
the safe dose range and flags any safety
concerns and side effects.
Phase II starts looking at the
effectiveness of the therapy and further
evaluates its safety.
Phase III is a bigger study, sometimes
with thousands of people and spanning
years, that compares this therapy with
standard or similar treatments or no
treatment (placebo). To earn FDA
approval, the drug must prove to be as
good as or better than what already exists. it harms people at a crucial time of their Karen Jackson
Phase IV follows FDA approval and is lives and robs them of certain opportunities (center) at the
National Multiple
designed to monitor how the treatment is and experiences, so it really helps people Sclerosis Society’s
working. “It’s not just boom, it’s approved, psychologically to be fighting back.” Public Policy
we’re done,” Ohayon says. “We still Conference in
Aviva Patz is a writer in Washington, D.C.
monitor safety and effectiveness for a
long time.” Montclair, New Jersey.
Ultimately, volunteering for MS research
could benefit your disease, but in Dr.
Green’s experience, it will definitely
benefit your state of mind. “In my years of
doing this, I’ve seen that the people who
participate in clinical trials are happier Learn more about enrolling in
clinical trials at ntlms.org/Trials.
because they’re part of the work that’s
helping overcome something they’re living
with,” he says. “There’s an injustice to MS— Care to comment? Email us at editor@nmss.org.
nationalMSsociety.org/momentum 19ADVERTISEMENT
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Cool places to spend time and beat the heat
Not everyone has the time or resources to jet off advertise their community centers as heat relief
to a cooler climate to escape the summer heat, or cooling centers during the summer months.
which can be particularly challenging for people Museums and galleries. Whether you’re into
with multiple sclerosis. Fortunately, there are art, natural history or space travel, museums
usually places located in your own community that are perfect places to stay cool and learn
might be able to provide some relief. They include: something new, because temperature and
humidity are controlled in order to protect
Gyms. People are active and working up a the exhibits.
sweat, so many gyms are kept cool. Consider Movie theaters or entertainment theatres.
joining a daily or weekly wellness program, Large crowds watching movies, plays or
which can give you a chance to exercise and comedy shows together tend to produce a lot
socialize. Or, find a gym with a pool kept cool of body heat, so theaters are usually kept cool
enough that you feel comfortable doing laps for the comfort of their patrons.
or other forms of water exercise. Libraries. Many air-conditioned libraries offer
Senior or community centers. Another way free Wi-Fi and computer access. as well as a
to socialize could be visiting air-conditioned variety of classes and workshops if you don’t
senior or community centers. Some cities even want to spend all of your time there reading.
Forging a path
to your best life
Inside this section: Acing temperature control 22 // State of limbo 30thrive
Samir Chandiwala is able
to play tennis again in the
summer after moving to
a cooler climate.
22 momentum ■ Summer 2019Acing
temperature
control by Vicky Uhland
How to cope
S amir Chandiwala loves to play tennis. But after he
was diagnosed with multiple sclerosis in 2005, he
gave up the sport. The heat and humidity in Augusta,
with heat Georgia, where he lived, affected him so much that he
sensitivity was barely able to go to his office in the summer—let
alone the tennis courts.
“I have spasticity in my back, legs and chest that
became worse each summer in Augusta. I’d have
full body spasms just crossing the parking lot into
work. Sometimes I couldn’t even walk,” Chandiwala
PHOTOS BY MATTHEW ALLEN
says. “I got so anxious about whether the heat would
exacerbate my MS symptoms that I think that made
my symptoms worse. And then that would give me
even more reason not to go outside in the summer.”
Chandiwala is one of the 60 to 80% of people with
MS whom researchers estimate have a temporary
worsening of their symptoms when they become
overheated. In fact, heat sensitivity is such a common
symptom of MS that in the 19th and early 20th
60 to 80% centuries, one of the main ways of diagnosing the
of people with MS are disease was to immerse people in water around 105
estimated to have a to 110 degrees and observe if neurologic symptoms
appeared or worsened.
temporary worsening of
Like most people with MS-related heat sensitivity,
their symptoms when Chandiwala tried the common coping strategies. He
they become overheated. cranked up the air conditioning in his home and car.
nationalMSsociety.org/momentum 23thrive
He drank cold beverages. He wore cooling vests but electrical transmission even more,” says Barbara
found that even the ones filled with ice packs weren’t Giesser, MD, a professor of neurology at UCLA.
effective in the Georgia humidity. And the vests caused This can create what’s known as pseudoexacerbation—
other problems as well. Chandiwala and his wife, a temporary, reversible worsening of physical and
Sarah Taufique, who wears a hijab, are Muslim. When cognitive MS symptoms that is caused by a known
they visited a butterfly show in a greenhouse, a woman precipitant, such as heat or an infection. “You feel
pointed them out to police because she mistook crummy, but it’s important to know that you’re not
Chandiwala’s bulky cooling vest for an explosive device. going to have any more nerve damage,” Dr. Giesser
Chandiwala decided he would need to take more says. So when your body temperature returns to normal,
drastic measures to beat the heat. He works as an your symptoms should revert to the level they were
engineer at a large manufacturing company with before you became overheated.
multiple U.S. locations, so he asked for a transfer to a “I have patients ask me: ‘Do I need to move because
cooler climate. There was an opening in Cincinnati, so living here is going to make my MS worse?’” says
Chandiwala and his family packed up and moved in 2007. Jonathan Carter, MD, a neurologist with the Mayo
Cincinnati summers are hot, but Chandiwala has Clinic in Phoenix. “I tell them they’re not going to
found there are breaks in the heat that allow his develop new lesions in their brain or spinal cord
symptom exacerbations to because they live in Phoenix. They’re
subside. He also switched his not harming themselves or making
Evidence suggests that
medications, which he believes their MS worse by living in a
has had an impact on his heat heat sensitivity becomes hot climate.”
sensitivity. And he started more common as the But because MS is unpredictable,
swimming and lost 15 pounds. disease progresses, but heat sensitivity can vary from person
He says weighing less helps to person, he says.
not in everyone.”
him feel cooler on hot days. Evidence suggests that heat
Thanks to all these changes, — JONATHAN CARTER, MD sensitivity becomes more common
it’s been three years since as the disease progresses, but not in
Chandiwala has used a cooling vest when he’s outside everyone. If you have fairly mild symptoms, you may
in the summer. He was recently able to take a beach be able to tolerate the heat better than someone with
vacation in Hawaii. And last year, he started playing more severe symptoms, Dr. Carter says. And he points
tennis again. out that people who already have difficulty walking may
“I don’t know anyone else who has as much heat find that their mobility worsens dramatically after as
sensitivity as me, but now I feel like I can cope. The little as a few minutes in high temperatures.
heat is no longer something I have to work my whole “People with more mobility issues tend to have more
life around,” he says. Here’s what Chandiwala and nerve damage, so it’s like you’ve got less to work with
medical experts recommend to beat the heat when when you get overheated,” Dr. Giesser says.
simple strategies aren’t cutting it. In some cases, it’s also possible to temporarily
develop symptoms you haven’t had before. “If you
Remember it’s temporary have an area of damage that’s functioning normally
The most important thing to know about summer heat under normal conditions, it could get worse with
is that it won’t make your MS worse. But it can make heat. But those symptoms should disappear when your
your symptoms feel worse. That’s because, according to body temperature is cooled,” Dr. Giesser says. So,
research, raising your body temperature by even as little as for instance, you could have lesions in a “silent area,”
half a degree can affect how your nerve impulses operate. like the part of your brain that affects cognition,
“Demyelinated nerves are already not doing a normal which could produce symptoms only when you
job of conducting electricity, and heat impedes get overheated.
24 momentum ■ Summer 2019The hottest and coolest places to live
Considering a move? Bert Sperling, who operates the website
bestplaces.net, has created the Sperling Heat Index to analyze
the hottest and coolest U.S. cities. Sperling’s index is based on a
city’s average summer high and low temperatures, along with
its dew point (a measure of humidity).
Seattle
Portland Salt Lake
City Denver
Detroit Buffalo
Milwaukee
San
Francisco
Pittsburgh
San
Jose
Las Vegas
Orlando
Phoenix
New Orleans
Miami
San Antonio Tampa
Dallas
Houston
Austin
Top 10 “sizzling” cities
Top 10 “chill” cities
nationalMSsociety.org/momentum 25thrive
Track the heat index 110 degrees in Phoenix, the heat index is the same as
The old adage “it’s not the heat; it’s the humidity,” when it’s 97 degrees in Nashville, Tennessee, because
can be particularly true for people with MS. Nashville’s average summer humidity is double that
“When it’s humid, it’s harder for your body to cool of Phoenix.
down,” Dr. Giesser says. “This affects everybody, but The higher the heat index, the more risk of
if you have MS, you tend to feel the humidity more.” pseudoexacerbation of previous symptoms—in most
One theory is that sweat—the body’s natural cooling cases. “I’ve found that humidity has as great an
system—doesn’t evaporate well in humidity, so it can impact on mobility symptoms as temperature alone,”
make MS symptoms like fatigue, leg heaviness and Dr. Carter says.
lack of energy feel worse. The key is the word “feel,”
though. Researchers don’t know how much of this is Summer shut-ins
attributable to the disease of MS itself, says Kathy Dr. Carter works with retirees and other patients
Zackowski, PhD, an occupational therapist and senior who are able to leave Phoenix for cooler climes in
director of patient management, care and rehabilitation the summer. But that’s not financially or logistically
research for the National Multiple Sclerosis Society. possible for many others with MS. These people
Dr. Carter says what you really need to pay attention can become summer shut-ins, afraid that even a
to is the heat index—the weather report that tells few minutes out in the hot sun can worsen their
you how hot it feels outside. For instance, when it’s MS symptoms—particularly the ones that have the
potential for social embarrassment.
Samir Chandiwala
and his family “For instance, many people with MS time their
moved from bathroom visits when they go out. But if you’re walking
Augusta, Georgia, slower because of the heat, it may take you too long
to Cincinnati. He to get to the bathroom. Or if the heat increases hand
swims and plays
tennis when there numbness, you may worry about how you’ll wipe
are breaks in yourself after a trip to the bathroom. And people with
the heat.
PHOTOS BY MATTHEW ALLEN
26 momentum ■ Summer 2019You can also read
